Herpes and nerve pain

[JessikaRabbit89]

I havent been on here much since ive picked up the pieces of my broken life after being diagnosed in December. I have managed the condition pretty well now and know what things to avoid to prevent outbreaks without the use of meds .But a few days ago I slipped up had a few glasses of wine and a bag of chocolates and just a day later I noticed skin sensitivity in my genital area that soon spread to my left leg down to my foot. The pain was so bad i was at work and could barely walk or stand and needed a coworker to help walk me to my car. I had to call out of work today due to the pain i took two 500mg of acetaminophen and soaked in epsom salt that did absolutely nothing to alleviate the symptoms. Its very sporadic and sharp only lasts a few seconds but it comes and goes throughout the day. I cried to sleep and had a breakdown because it seems like theres nothing i can do to stop it....I took a Vicodin leftover from a previous prescription and thats the only relief i have had since yesterday afternoon. Im at my wits end. Any of you suffer from this? How do you relieve the pain? Aside from this i have to say my life has been back to the old normal which is wonderful but i cant tolerate a lifetime of nerve pain...please help me.

[whitedaisies]

All I can say is in time it will lessen. I had that foamy any for 11 months. I think I am out of the ordinary but I promise you, if mine lessened yours will.

 

Honestly I found hot showers helped and tbh when I would masturbate te nerve pain would decrease. I would suggest meds for nerve pain meds prescribed by ur dr

[JessikaRabbit89]

I tried that last night as well. Masturbating helped distract my mind from the pain but as soon as i finished the pain just intensified. This is honestly the worst pain i have ever felt. Its like a deep excrutiating stabbing sensation that repeats itself every 5-10 minutes throughout the day. So bad to the point i have to catch my breath or brace on something to tolerate it. Its driving me nuts. Right now i can still feel the tingling but the vicodin has numbed it down a lot. Im definitely getting seen tomorrow because i cant stand another night of sleeplessness and irritability.

[whitedaisies]

How about vagisil? It kind of numbs I think. Do u have that in te states? Or the health food store may have a supplement.

 

I feel for u sweetie. I hae been there. It sucks so bad. I wish I had a magic wand.

[JessikaRabbit89]

Yep we have vagisil here but i dont think it will help as far as the pain in my leg and foot goes. Luckily i have no lesions just the pain but to be honest as bad as i feel i think id rather have a lesion. At least i could treat that with coconut oil or antiviral. *Sighs*

[whitedaisies]

I know. I never had lesions just pain. Sometimes I wonder what would be worse but honestly the lesions go away the nerve pain is horrid.

 

Get the nerve meds and see if u can get repeats.

 

I honestly didnt take anything. It was horrible pain everyday for 10 months. I had no lesions so everyone said can't be h. But it just manifested like that in me. Weird.

 

The pain is exhausting. I just kept taking hot showers sometimes 4 a day

[whitedaisies]

The leg and foot pain are referral pain from the sacral ganglia. If u get the pain in your vagina to go away it should lessen leg and foot pain

[JessikaRabbit89]

Geez, how on earth did you pull through it for so long? Its only been 2 days and its like hell. You have a point in treating the vaginal pain. Thats surprisingly not anywhere near as painful as my foot. There seems to be like sensitive patches of soreness on certain areas of my leg and thigh and an area on my inner labia thats abit sore. Its all only effecting the left side. Weird.

[Getbetter111]

Only thing I can think is PHN that is most common with shingles but is reported more and more with hsv.i am having same thing going on the skin will turn red and feel irritated. I would say mine is more burning feeling sucks bad.my back has also been sore for over a month. I read that 50% of people got some relief from antivirals for PHN ?

[whitedaisies]

Common for it to be one side as herpes when It settles only affects one side usually.

 

I honestly don't know how I did it. Even now looking back I can't believe it. But I needed to know what was happening down there so I could explain to dr what was happening bc I never had a positive swab or blood test at the time.

 

I can take physical pain anyday the emotional pain of everything I have been through is far far worse.

 

Take the nerve meds and hot showers did more fore than baths to keep you going.

 

Lots of hugs. It will get less wih time

[JessikaRabbit89]

thanks you guys for your replies. i took a nice long hot shower and it helped for the moment..idk if its PHN because i havent experienced a shingles ob and thats usually what thats associated with. The vicodin is wearing off now and the pain is slowly but surely returning...this is really a nuisance. I cant get comfortable no matter what i do. another night without much sleep i guess :\

[whitedaisies]

Yah I constantly took hot showers. Be careful your skin doesn't dry out. Make sure you moisturize everywhere to avoid skin irritation and severe dryness.

 

It's a year later and I still take 2 or 3 showers a day but my pain is substantially less.

 

Take a shower before you go to bed especially and hopefully it will help you get some shut eye.

 

Gosh I hope you get your prescription tomorrow. Thy should help tonnes.

 

I also felt sitting on the toilet eased some pain too maybe because there is less pressure on the nerve I dunno. I used to sit there and put like a night stand in front and a pillow and rest.

 

Kind of embarassing but it worked for me.

[JessikaRabbit89]

Well well, I guess the sharp nerve pain was the prodromal symptoms. Now I'm itchy down there and I accidentally scratched too rough and tore a little skin so now its even more painful than before. Ugh. Time to double up on the good ol' Valtrex.

 

I'll keep what you mentioned in mind for my next nerve episode though. Anything to reduce the severity of it helps.

[whitedaisies]

Shit. Ok do all the external stuff now so it doesn't get worse to dry it out.

 

Hugs

[JessikaRabbit89]

Lol most definitely. Thank you for the feedback im relieved to know I'm not the only one experiencing this ordeal. Greatly appreciated it. **hugs**

[whitedaisies]

Hugs back sweetie.

[elle789]

I was diagnosed with GHSV-1 2 years ago this summer and for almost a year I had the shocks and nerve pains countless times a day. It seemed I had small outbreaks that were barely visible back to back. It was a constant reminder and I was miserable. But yes, it does eventually get better. I went on suppressive therapy and it has worked wonders. It took a couple of months though. I will still randomly have those shocks and an itch here and there every few days, but nothing becomes of it. I'm not sure what's going on, but I have been in a relationship for over a year and have not passed it on to my knowledge.I have been very careful though. This thing does not act typical and no two cases are the same. Many doctors won't listen. They know what they see in text books and will try to pin your neuralgia on something else- I will be a doctor myself next year and I feel I have an idea how they work. Find one who will listen. (My condition has sure helped with empathy). Bad news, there is no magic pill to cure the nerve pain. The nerves get irritated and it takes a while for them to heal and for the antibodies to kick in. Patience is key with this thing. The less attention you give it, the better it becomes...and time always helps (As well as long epsom salt baths)..and good news ---eventually you'll be able to drink wine & coffee AND eat chocolate & nuts again! (I couldn't do any of it at first)..Good luck with everything!

[whitedaisies]

@elle789 ur situation is very similar to mine

 

I was having back to back ob too I think w no lesions. All the docs said nope not h. It is wonderful hearing similar stories even though it's horrible to know more people are going through this horrifically physical pain

 

Thx for sharing ur story. I was feelin like a bit of a herpes outcast with all my symptoms.

 

I don't think doctors and even experts realize that h affects individuals differently

[JessikaRabbit89]

wow thats very pleasing to know this is all temporary. i know my body is still adjusting to it. typically i have high tolerance for pain, or so i thought. its crippling and leaves me absolutely miserable. the pain has eased up since yesterday, of course right before my dr appointment the symptoms get better. but i now have a lesion so at least the dr will take my situation a little more serious. I never have lesions when I visit my doc so as far as they're concerned, it wasnt that bad.

[whitedaisies]

@elle789 what do u mean by very careful

 

I obstained for a year bc I felt contagious all the time. How are you careful? Take meds and use condoms and throw caution to the wind? Can u tell me how you decide hen it's relatively safe to have sex?

[elle789]

I also abstained for almost a year because I never knew when it was safe and I was terrified to tell my new boyfriend (he waited for almost 5 months after we met). When I got my definitive results back and told him, he barely blinked an eye. He never mentions it and it is on my mind constantly, but we don't ever talk about it. It's like beating a dead horse. By careful I mean, suppressive therapy and condoms. Not to say we haven't had a few times that we didn't use condoms for a short period of time. I'm not on birth control so it's definitely needed anyway. I still worry when I have aches and pains here and there, but it's so often that I don't know what to think and I was angry at the thought of putting my life on hold forever. Every time he gets the slightest bit sick or works out too hard and his butt muscles hurt, I panic thinking I've given it to him. This thing really has a way of messing with your head. There's no sure way to tell when it's safe, but you'll get to know your body as time goes on. Since there is no way to tell for sure unless you're getting swabbed every day, I would suggest taking the proper precautions until things settle down. If you see any obvious irritation or inflammation, I wouldn't risk it. Nerves can be deceiving though. Another thing, not to get too personal, but oral sex doesn't have to be out of the question. We don't use rubber dams and HSV-1 prefers the mouth, so one would think that if I were as contagious as I feel all the time, something would have come up by now.

Don't be discouraged!

[whitedaisies]

Thanks. I have decided a year is Long enough to abstain.

 

I let him perform oral sex on me without dental damn. He's fine with it and if I give it to him in the mouth I am ok. It's just like kissing as I have it orally too. Of course no blisters. Same stuff going on orally as genitally.

 

He says he will focus on me for a while til I get comfortable. And frankly since I have gone so long I am enjoying the attention.

 

I haven't had the courage To perform oral on him yet or have genital sex. He is being super patient and says he's ready when I am.

 

We are not forever after Mates so I think it bothers me more bc of that. Feel like if/when he leaves and they always do....that he will take this burden with him. I struggle with that.

 

Thank you so much for sharing your story. It is helping me a lot.

 

I haven't transmitted this to anyone....had a few partners in between that didnt involve intercourse BuT their status of hsv1 was unknown to me...tey could have had it and I didn't know.

 

This is my first real disclosure involving intercourse

 

Anyway again thank u. Hugs

 

[WCSDancer2010]

@JessikaRabbit89

 

Hey Chica! Missed you on here!!

 

Given that this occurred right after the wine and chocolate combo, I'd get on L Lysine (take a big dose first day, then 100mg/day after) and drink a LOT of water to flush the system and see if that helps ....

 

(((HUGS)))

[Danaaaaaasaur]

I've been diagnosed with PNH so I'm on a combo of anti seizure meds and tricyclic antidepressants which has helped reduce the pain but oh boy the drowsiness and dry mouth are pretty sucky side effects of the meds haha x

[JessikaRabbit89]

missed you too! @WCSDancer I knew you or someone here would have all the answers and know just what to do. Okay so L-lysine. Got it. I was always skeptic of taking it but I have probably had a total of 6 outbreaks since November, some extremely mild and cleared up in a day or two and some that were extremely annoying. This was has been the worst since my very first ob and the nerve pain still hasnt disappeared yet...

 

@Danaaaaaasaur, did you get PHN from herpes or did you have Shingles? Just curious..my doctor prescribed me Ultram for the pain but it just passes me out.